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What do I do now? First steps with possible Aspergers

(11 Posts)
TizzyMcTizzy Fri 07-Mar-14 10:35:36

Long term MNer but I've name changed because I don't want Brown Owl reading my other posts smile Sorry this is so long.

I had a call last night from dd's new Brown Owl because they were concerned about dd who's 7. At pick up time I had a chat with her and one of the other helpers. They are both teachers too. The general gist of the chat was they both think that dd has Aspergers. One of them had done some basic tests on dd following dd having one of her epic meltdowns and they were actually surprised that we didn't have a diagnosis.

Now I know that just because it has been raised, it doesn't mean it's definite but I have been wondering the same thing myself for some time and have always assumed I was just overreacting to her being different. They were adamant that I wouldn't be overreacting.

She is clever but odd. Has always been 'eccentric'. She doesn't join in with things that all the other little girls do like party games, dressing up. And if she is the odd one out because she won't do those things then it doesn't bother her in the slightest. She has epic meltdowns that cannot be comforted. She has to go away and covers her face and ears. We have problems with food. She lives in an imaginary world a lot. Sensitivity to noise. Lots of things. I could go on but you get the idea. As my youngest is getting older, the fear I had that it was our parenting that was making her odd is receding because he's so normal.

Added to that yesterday it turns out that the bullying in the playground has now escalated to physical bullying. Boys are kicking footballs at her and the 'pretty girls' are making fun of her. Her best friend since babyhood has defected to the pretty girls and all dd's eccentricities are now bullying fodder. I'm in bits about the bullying because I was bullied all through school and I don't want that life for her.

I talked to school before she started about her being different. I've talked to them every year about her being different. At one point they made a half hearted assessment of her being G&T but there was never any concrete feedback although they sent her on a G&T event. They just don't do 'different' and the head's as wet as Somerset. We have moved house and we're trying to get her in to the school near us but there aren't any places at the moment.

So I suppose my questions are:
1. What do I do now? I rang the GP but I can't even speak to a GP for advice until next Thursday. And the receptionist was trying to write down asthma rather than aspergers and insisting I bring dd in to be examined at first.
2. What would be the benefits of a diagnosis? Would they be able to help her in the social situations like the bear pit of the playground? Can they stop her being hurt?
3. We can afford to do this privately. We'd find the money. If we need to see someone to get stuff in place then I'll do it. Are there lists or anything of decent people to see that I can look at or can anyone recommend anyone in Sussex or nearish to Sussex that we could travel to.
4 Is there anything I can do to help her with this? I do suspect that I and/or DH might well be on the spectrum. DH has it in his extended family and there are many things that make me think I have it too. Is it worth trying to get either of us diagnosed to get some support as a family because I know I'm projecting about the bullying and I hope Ds will sail through life on a cheeky smile but I'm worried about the damage we might be doing to him.

Sorry this so long and garbled. I am in tears at the thought of sending my beautiful sensitive dd into school to be bullied and my instinct is telling me to keep her home and safe with me but I have to work and ds needs time where I'm not 'handling' dd - it can be difficult at times. Part of it's relief that someone external and new to dd has spotted this and I'm not just a fusspot.

TIA if you got through this and have any advice.

PolterGoose Fri 07-Mar-14 11:22:51

Hello Tizzy I have a 10yo ds who has a primary dx of Aspergers. Diagnosis has been the best thing for him. The are a few threads relatively current on the SN Children board about girls and AS which might be with a read. My advice is to do some reading (Tony Attwood is the AS 'guru') and make notes as you go, keep a detailed diary and ask GP for a referral to a developmental paed, you don't need to take dd to the GP, but take a summary of your notes, diary, concerns and what others have noticed. The GP can attach a copy to the referral for assessment.

There's also a thread on this board for women who have or might have ASD which you might find interesting for yourself smile

TizzyMcTizzy Fri 07-Mar-14 11:40:15

Thanks Polter I have been googling a bit and found some additional info and I will take a look at the other threads and Tony Attwood. Reassuring to know that diagnosis has been good for your ds.

I will also start making notes.

Yes, I just read an article here which is about Women with Aspergers and the stuff at the end about wearing jeans and a tshirt, comfy shoes, multicoloured hats and no makeup is where I am these days! I may wander over to the grown up thread too.

I did also speak to a local centre that seems to specialise and take GP referrals and they're looking at August for appointments! Private or NHS.

PolterGoose Fri 07-Mar-14 11:54:48

It was NHS for us, I never even considered private, but it's very much personal choice and depends on resources and urgency. School support should be based on need not diagnosis so you might want to have a look at the SEN-COP.

Oblomov Fri 07-Mar-14 12:27:02

Agreed. What has school said?
Is school supportive? Even if you get a diagnosis, if school isn't 'with you', then diagnosis won't result in any extra support.

What have the school done about the bullying? Irrespective of AS.

I got nowhere on NHS. I went to top Paed privately. And then asked him to re-refer me back into the NHS. But I only did this because 1st NHS Paed was dismissive and told me to go away. Thus private was worth every penny. But my situation is unusual, and you shouldn't really need to go down the route I did.

TizzyMcTizzy Fri 07-Mar-14 13:16:56

I think the private route features in my ideas because of things I've seen on here about fighting with the system to get results. We aren't rich but we do have a rainy day pot. I will go down the NHS route first unless there's any massive benefit or hurdle that would be more easily overcome. We have such mixed experience of the NHS in unusal circs so I'm nervous.

School will make all the right noises. Her class teacher is good but I think they'd prefer not to have a difficult life. If I make it difficult to do nothing then I will. The school we are #1 on the waiting list for is apparently good for SN according to a parent with experience.

I will see the HT asap wrt the Aspergers and the bullying.

TizzyMcTizzy Fri 07-Mar-14 13:22:05

The class teacher is now aware that it's escalated and I could explain properly to him this morning so we'll see. He is on playground duty today so hopefully he will see stuff for himself. He did have a general chat about bullying with the class before but I don't think it worked.

I can imagine that Dd isn't adept enough at social stuff and won't do herself any favours in avoiding making herself a target sad

PolterGoose Fri 07-Mar-14 14:29:56

Hope the teacher sees what's going on, can you help develop and support friendships out of school?

TizzyMcTizzy Fri 07-Mar-14 16:56:08

She is at a friend's house for tea today. We don't have lots of friends with the same age children but I do make sure she does have girls that she's friends with home regularly. We did see a fair bit of her best friend but that's been a minefield in recent months as she drops Dd regularly these days. Dd is the standby friend.
She won't do clubs like swimming. How I got her to Rainbows, I don't know. Fortunately the 'pretty girls' aren't at her Brownie pack.
We're not from here, we don't have much family and none is local. DH has no friends and so we're dependent on school and my limited social skills.

Mollyweasley Fri 07-Mar-14 18:27:27

We went private. Ds2 (AS) has a diagnosis, DD1 (lost of traits) hasn't and I have a double diagnosis of ASD and ADD. DS and DD actually have some issues that are similar at school but whereas I struggle to get the right support at school for DD1, I get a lot for DS2. I would think that with issues such as bullying you would get much more input from the school as she would then be considered as a more vulnerable person. I think that DS1 gets much more TLC than DD2 because they realise that his needs are significantly different. Hope this helps.

TizzyMcTizzy Fri 07-Mar-14 19:23:27

Thanks Molly. Yes it's the idea that she's vulnerable to the other children that bothers me. She's just baffled when it happens. She's never hit another child, didn't snatch toys etc.

Her ct seems to have done something today bless him. She's had an apology from the girls in question and no footballs today. We will see how long that lasts! Plus she's had a lovely time playing with her friend this afternoon so she's less muddled up tonight.

Brown Owl said to ring her so I will do that over the weekend and see what I can do on Monday.

Thank you for talking to me today.

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